Question? 5FU or Xeloda.... difference and side effects

idlehunters
idlehunters Member Posts: 1,787 Member
edited March 2014 in Colorectal Cancer #1
I was discussing this with the makers of Xeloda and of course they are bias on their opinion. I knew I could get it straight from ya'll

Jennie

Comments

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #2
    Hmmm
    I did the Xeloda in pill form with the radiation treatments. I am now on the 5FU infusion chemo. I'm not sure what the difference is, but somehow I thought they were the same. Guess I don't ask enough questions about what I'm getting (taking). I'm curious now.

    Kim
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    Differences
    As usual, my story is not the same as anybody else's.

    My first bout with Cancer, I was doing the 5fu on the pump - but the difference is I'm reading how everybody does the 46 hr pump and then disconnects - I wore my bag for 7 straight days and 5fu pumping constantly for 24 hours a day during that 7-day period.

    As far as I could tell, the 5fu did nothing to me, it gave me a big misconception on what chemo was supposed to be. I did not get the side effects that most people talk about.

    Xeloda was a different story - my doseages were quite aggessive and the toxicity built up in my feet very quickly and was a big issue, a huge issue. It was also very hard on my guts and burned alot the more I took, anti nausea meds helped some....

    Now, clinically, Xeloda is 5fu in a PILL.

    I wonder if Xeloda could be biases because they are a pharmaceutical company and they make MONEY with their new drug, that couldn't be it, or could it? :)

    -Craig
  • Paula G.
    Paula G. Member Posts: 596
    #4
    Good Question
    Jennie, What are you on now? Are you on FOLFOX plus Avastin? That is what JR is on. I have wondered the same thing. Paula
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #5
    My own experience and mal absorption issue
    Hi Jennie,

    Yes, technically Xeloda is the "same" as 5Fu, but in pill form & then the leucovorin doesn't need to be taken like with the 5FU because some kind of equivalent is "built into" the Xeloda pill. I have taken both. From what I always heard, most people have more issues with hand/foot syndrome while taking the Xeloda than with the 5FU. I had the reverse and taking Xeloda for me was fairly easy. How much your dose is obviously makes a difference. Initially, I took 500 mg. 2x/day, for a total of 1,000 mg/day & I really had no side effects at all while on that dose. This was considered a "maintenance dose". I changed oncologists and my new guy didn't think my maintenance dose was high enough, so he doubled it. He had even thought of upping it even more than that at one point too. Side effects started in as my dose went up- specifically with the hand/foot syndrome (which I got only in my feet, not hands- sore, red skin that blistered easily when I'd walk short distances), and also the diarhhea got worse. My overall reaction to it, however, was much better than when I had been on the 5FU before (which was in conjunction w/ Folfox and Avastin also). This all said- you can see that why I thought taking Xeloda was a breeze and why I would be hesitant to be on the 5FU again (assuming my side effects would again be stronger on the 5FU). But, I did just that...

    Just recently, I had a scan that revealed a recurrence in my liver and lugns, so last week I started up more chemo- Folfiri with Avastin. Actual "Folfiri" consists of irinotecan, leucovorin, and the 5FU pump. We had agreed on me taking the irinotecan again, but had a lengthy discussion on whether to continue the Xeloda or switch to the 5FU pump. As much as I hated the idea of having that pump hooked up to me for 46 hours at a time and not being able to shower during that time, I think it was the best decision for me for now. The reason is one that I've actually not heard discussed by any other doctor or by anyone else on this board before. The issue was absorption. After I realized a few months ago that I wasn't completely absorping some of my vitamins and supplements through my digestive system in the pill form, I had switched to taking my vitamins and my vitamin D through the under the tongue spray form (sublingual- it absorps directly into the bloodstream from there, bypassing the digestive system). Within 3 weeks, when I tested the supplement/vitamin levels in me again, they had all drastically gone up. This showed that having the supplements bypass my digestive system is better and that I perhaps have an issue with absorption to some degree. I read somewhere else recently that many people who have "colon issues" have problems with absorping many nutrients and they don't even realize it (it didn't specificy colon cancer- it was talking mostly about people with colities, Chron's, etc, but I think it still could apply)
    So... long story still long :) ... this whole absorption issue got me thinking about the Xeloda I had been taking. I questioned my onc on it, asking if it could be possible that I wasn't getting the full effect of the Xeloda due to malabsorption. He replied that was an interesting question- one that doesn't get talked about much. He said the fact that I did have side effects from the Xeloda proved that it was definitely getting in my system, BUT the fact that I had fewer side effects from it than I had had from the 5FU could maybe mean that I'm not getting the FULL effect from the Xeloda like I should be. With that said, he told me he'd be more comfortable with me on the 5FU, knowing that I was for sure getting the full dose, but he'd leave the decision up to me. That decided it for me- with a recent recurrence, I wasn't about to stay on the Xeloda if there was even a chance I wasn't absorping it all- so back on the 5FU pump I went.

    Everyone is different, of course, but that's my experience with the two. It's good to hear different stories from lots of different people with different responses. Maybe you can find someone that you seem to be similar to in your reactions and it could maybe help you make a decision based on that.

    Take care-
    Lisa
  • lesvanb
    lesvanb Member Posts: 905
    #6
    lisa42 said:

    My own experience and mal absorption issue
    Hi Jennie,

    Yes, technically Xeloda is the "same" as 5Fu, but in pill form & then the leucovorin doesn't need to be taken like with the 5FU because some kind of equivalent is "built into" the Xeloda pill. I have taken both. From what I always heard, most people have more issues with hand/foot syndrome while taking the Xeloda than with the 5FU. I had the reverse and taking Xeloda for me was fairly easy. How much your dose is obviously makes a difference. Initially, I took 500 mg. 2x/day, for a total of 1,000 mg/day & I really had no side effects at all while on that dose. This was considered a "maintenance dose". I changed oncologists and my new guy didn't think my maintenance dose was high enough, so he doubled it. He had even thought of upping it even more than that at one point too. Side effects started in as my dose went up- specifically with the hand/foot syndrome (which I got only in my feet, not hands- sore, red skin that blistered easily when I'd walk short distances), and also the diarhhea got worse. My overall reaction to it, however, was much better than when I had been on the 5FU before (which was in conjunction w/ Folfox and Avastin also). This all said- you can see that why I thought taking Xeloda was a breeze and why I would be hesitant to be on the 5FU again (assuming my side effects would again be stronger on the 5FU). But, I did just that...

    Just recently, I had a scan that revealed a recurrence in my liver and lugns, so last week I started up more chemo- Folfiri with Avastin. Actual "Folfiri" consists of irinotecan, leucovorin, and the 5FU pump. We had agreed on me taking the irinotecan again, but had a lengthy discussion on whether to continue the Xeloda or switch to the 5FU pump. As much as I hated the idea of having that pump hooked up to me for 46 hours at a time and not being able to shower during that time, I think it was the best decision for me for now. The reason is one that I've actually not heard discussed by any other doctor or by anyone else on this board before. The issue was absorption. After I realized a few months ago that I wasn't completely absorping some of my vitamins and supplements through my digestive system in the pill form, I had switched to taking my vitamins and my vitamin D through the under the tongue spray form (sublingual- it absorps directly into the bloodstream from there, bypassing the digestive system). Within 3 weeks, when I tested the supplement/vitamin levels in me again, they had all drastically gone up. This showed that having the supplements bypass my digestive system is better and that I perhaps have an issue with absorption to some degree. I read somewhere else recently that many people who have "colon issues" have problems with absorping many nutrients and they don't even realize it (it didn't specificy colon cancer- it was talking mostly about people with colities, Chron's, etc, but I think it still could apply)
    So... long story still long :) ... this whole absorption issue got me thinking about the Xeloda I had been taking. I questioned my onc on it, asking if it could be possible that I wasn't getting the full effect of the Xeloda due to malabsorption. He replied that was an interesting question- one that doesn't get talked about much. He said the fact that I did have side effects from the Xeloda proved that it was definitely getting in my system, BUT the fact that I had fewer side effects from it than I had had from the 5FU could maybe mean that I'm not getting the FULL effect from the Xeloda like I should be. With that said, he told me he'd be more comfortable with me on the 5FU, knowing that I was for sure getting the full dose, but he'd leave the decision up to me. That decided it for me- with a recent recurrence, I wasn't about to stay on the Xeloda if there was even a chance I wasn't absorping it all- so back on the 5FU pump I went.

    Everyone is different, of course, but that's my experience with the two. It's good to hear different stories from lots of different people with different responses. Maybe you can find someone that you seem to be similar to in your reactions and it could maybe help you make a decision based on that.

    Take care-
    Lisa

    Xeloda vs 5FU
    My oncologist at the Huntsman also mentioned the absorption issue with Xeloda and recommended I do that instead of Xeloda with the radiation. I didn't mostly because I had to travel 5 hrs/day to get radiation and Xeloda was more convenient. With my adjuvant therapy, FOLFOX, I did do the 5FU and 46 hrs pump. I did not have significant side effects with either. I took 4 tabs/twice day of Zeloda for 2000 mg/day. However I also was hospitalized with an opportunistic bacterial infection in my colon and was off the chemo for 2 weeks out of the 4.5 weeks of radiation.
  • karguy
    karguy Member Posts: 1,020 Member
    #7
    Xeloda
    I did the xeloda pills,with radiation,and the only side effects I had with xeloda was numbing of my fingers.I had no problem with my feet,although some people do.I hope that helps.
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    #8
    karguy said:

    Xeloda
    I did the xeloda pills,with radiation,and the only side effects I had with xeloda was numbing of my fingers.I had no problem with my feet,although some people do.I hope that helps.

    Great Answers
    Yes Craig..... MONEY is the reason they are bias. This whole cancer thing is so based on MONEY it just makes me sick. lol....literally.

    I am on Folfiri with Avaston and the 46hr pump. I hate it too but if it keeps me living...I love it. I have been looking into other options of treatment in case when I go to Onc Thursday and review PET (if I find no improvements have happened)...I will have something to fall back on. I like to stay on top of my own treatments. I trust no doctor.... not even my own. Since he insisted on prescribing me their "own" mixture for thrush and denied me Magic Mouthwash I know now he is just a MONEY guy too. He wasn't concerned about me. What doctor hasn't heard about Magic Mouthwash? I talked to 2 Pharmacy's and they said it's been around more than 20 years.

    Anyway, back to Xeloda. I can definately see how you would not get the full potential from the 5FU pill. That has given me something to think about.

    Thank you All for your comments

    Jennie
  • Paula G.
    Paula G. Member Posts: 596
    #9
    idlehunters said:

    Great Answers
    Yes Craig..... MONEY is the reason they are bias. This whole cancer thing is so based on MONEY it just makes me sick. lol....literally.

    I am on Folfiri with Avaston and the 46hr pump. I hate it too but if it keeps me living...I love it. I have been looking into other options of treatment in case when I go to Onc Thursday and review PET (if I find no improvements have happened)...I will have something to fall back on. I like to stay on top of my own treatments. I trust no doctor.... not even my own. Since he insisted on prescribing me their "own" mixture for thrush and denied me Magic Mouthwash I know now he is just a MONEY guy too. He wasn't concerned about me. What doctor hasn't heard about Magic Mouthwash? I talked to 2 Pharmacy's and they said it's been around more than 20 years.

    Anyway, back to Xeloda. I can definately see how you would not get the full potential from the 5FU pill. That has given me something to think about.

    Thank you All for your comments

    Jennie

    Jennie
    One of the first things John's Onc said was " You have good Insurance". This sent a red flag up for me.
    I too am always looking at treatments. This board is so helpful.
  • tabur
    tabur Member Posts: 71 Member
    #10
    Paula G. said:

    Jennie
    One of the first things John's Onc said was " You have good Insurance". This sent a red flag up for me.
    I too am always looking at treatments. This board is so helpful.

    5-FU and Pump
    My wife's 1st chemo round was with Folfox 6 w/Avastin. She wore the 46 hour pump and other than her hands being sensitive to cold, she had very few side effects. Well, I guess that's not totally true as the protein level in her urine shot up far enough that they had to discontinue the Avastin.

    She also developed blood clots near the medi-port and they removed it right after her last cycle. Her onc does not want to install another one due to the risk of clots.

    Her latest scan shows her tumors are growing and the onc wants to try irinotecan, and 5-FU in pill form.

    She is stage IV with mets to liver, I hope this works.

    Al

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